WHEN 13-YEAR-OLD Hannah Cross reached the end of her short life she had one wish, to try to ensure that other children didn’t suffer as she had.

When her symptoms first began to show, at the age of 11, it took five GP visits and two hospital stays for her to finally be diagnosed with a rare form of soft tissue cancer, Alveolar rhabdomyosarcoma.

The delay of almost three months may not only have affected her long-term prognosis, but left Hannah feeling she was not being listened to in her final days.

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Every year in the UK around 1,600 children under the age of 14 and 2,200 young people aged 15 to 24 are diagnosed with cancer. Shockingly, 52 per cent of young people visited their GP at least three times before their cancer was finally diagnosed.

Last year a report conducted by children’s cancer charity CLIC Sargent found that 46 per cent of GPs believed that a lack of training opportunities is a barrier to identifying childhood cancer.

In response to this worrying discovery, CLIC Sargent and Teenage Cancer Trust have worked together to create an e-learning tool for medical professionals to help them diagnose cancer in young patients.

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Hannah's symptoms first began to show at the age of 11

The tool will point out pitfalls and give more detail for signs and symptoms of childhood cancers, which can often be very rare.

Hannah was amazing, she smiled through it all

Simon Cross

Hannah’s parents, Simon and Donna, from Sleaford in Lincolnshire, back the initiative to provide GPs with extra training: “One of the things Hannah said was that she didn’t want another child to go through what she had,” says Simon, 48.

“So it does help us knowing that we can do things to help make that come true. If we can make a difference, if we can get one doctor to make a diagnoses early enough to affect a child’s prognosis, then we will know that we have done what she wanted."

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In May 2012 Simon’s sporty and active daughter began to experience lethargy and pains in her stomach. Knowing their child, he and Donna felt that something was wrong and immediately took her to their local doctor.

“Every parent dotes on their child but Hannah was a kind, loving, outgoing person. We just knew something was wrong but our local surgery wasn’t offering any answers.”

Hannah’s symptoms persisted and the family returned to their GP four times before she was referred to a specialist ward at Nottingham’s Queen’s Medical Centre.

On August 1 she was taken for an MRI scan and the following day they were given the heartbreaking news that their daughter had a large mass in her abdomen and would be starting chemotherapy immediately.

Hannah went through dozens of rounds of treatment and looked to be doing well but sadly she relapsed in January 2014, dying the following September.

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It took five GP visits and two hospital stays for her to be diagnosed

“The initial shock was hard to cope with,” says Simon. “Hannah was amazing, she smiled through it all. She had her dark moments obviously but overall she just smiled, even during chemo. We have those memories of her being so strong.

“She had all the usual symptoms and lost her hair. She was upset about that and that she didn’t get to start secondary school with her friends but her main thing was that she just wanted to be normal, like everyone else.

“Parental instinct is really important. We knew something wasn’t right but we weren’t sure what. A GP doesn’t have that. They can’t refer every patient who comes in for an MRI scan, that’s not practical, but they do need to listen to parents who know when something is wrong.

“They might have a medical background but a parent knows their child. When Hannah was diagnosed it was ‘metastatic’, which meant it had spread and is one of the consequences of a delayed diagnosis. Hannah’s cancer could have been diagnosed a lot earlier. We don’t know what difference that could have made.”

Kate Lee, chief executive at CLIC Sargent, said: “Cancer in children and young people is rare and that can make it difficult to detect. However many parents and young people felt that delays in their diagnosis impacted on their prognosis, treatment, and emotional state.

“We appreciate how difficult it can be for a health professional to make a diagnosis of a rare cancer, especially given the immense pressures they face every day. That is why we want to ensure that doctors have all of the information they need to help them make these diagnoses.”

The extra support has also been welcomed by the Royal College of GPs, whose spokesman on cancer Dr Richard Roope says: “When you consider that GPs across the UK make in excess of 1.3million patient consultations every day, it brings home just how difficult identification of such a rare condition is at initial presentation.

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She died from a rare form of soft tissue cancer, Alveolar rhabdomyosarcoma

"So any resources, such as this new e-learning course, to support us in the identification and appropriate referral of the disease is welcome.

“GPs are already doing a good job of appropriately referring our young patients who we suspect of having cancer but the average GP might only see one new case of childhood cancer every 19 years making diagnosis difficult, particularly as many symptoms are similar to other much more common conditions.”

For Simon and Donna, the development of the e-learning tool is a step towards fulfilling Hannah’s final wish and helping GPs make informed choices about children who may have a life-threatening illness.

“This a such a great idea. Some doctors could go their whole career without seeing a single case of childhood cancer. Family doctors need to be aware of some of the red flags so they can carry them in the back of their mind. It isn’t about blaming GPs but about giving them the information they need.

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“As a parent, there is no way to describe that initial shock of learning your child is sick. You have no way of knowing how to deal with it. And you are helpless, completely reliant on the specialists; that they know what they’re doing.

“I know parents who dwell on whether or not their child would have survived. It eats them up thinking they could have changed the outcome. Donna and I feel guilty thinking what else we could have done, but I don’t see the point in clinging on to the pain.

“We can’t change what has happened but it was Hannah’s wish that her story could help others. She’s not here any more but we want to let people know what happened in the hope it will help other families out there.”

l GPs and healthcare professionals can access the course by signing up for a free account on the RCGP eLearning site. elearning.rcgp.org.uk/cancercyp